Derby City Spinal Cord Injury Association - http://www.derbycityspinalcord.org
http://www.derbycityspinalcord.org/articles/40/1/JULY-2004-Newsletter/1.html
JULY 2004 Newsletter - Published on 07/1/2004
 

Page 1

THE DERBY CITY NSCIA NEWSLETTER

JULY 2004

The Derby City Chapter of the National Spinal Cord Injury Association Network- Serving Kentuckiana.

Message From the President

Dear Members & Friends-

We won't have a speaker this month, but we will show a video and pizza and drinks will be provided.

So please come on out and spend a little time with your fellow members talking about what is important to us and how we may improve the chapter.

Next month's meeting will be held at Frazier Rehab, 4th floor dining room. Social hour: 6:30; speaker at 7:00 p.m. Refreshments provided.

- David Allgood

DON'T GET MAD, GET ELECTED (From New Mobility)

When it comes to making public buildings accessible,Robert Denhardt didn't get mad, he got elected. “Since I live with disability, I saw the problems firsthand and...we have to make sure people have access to public buildings,” says Denhardt, a Republican who was a member of the Representative Town Meeting of Branford, Conn., for 16 years and selectman of the town for the past 2 years.

Denhardt, 69, was diagnosed with MS over 25 years ago and has used a wheelchair for close to 16 of those years, just about the same time period he has served in public office. “It's amazing, the wheelchair hasn't really created a problem,” he says. “People just accept it, and they try to help me very cautiously.”

He's chair of the town's access committee and is proud of the committee's success rate; “We study new buildings to make sure they're going to be accessible and we have existing buildings put in access provisions.” That's no easy chore since some buildings, like the town hall, were built in the 1800's. “Fortunately we were renovating town hall just when I got elected,” he says. “I'd say that now 95 percent of our public buildings are accessible. It hasn't been easy, but it's something we've worked on.

 

The following is from New Mobility, May 2004 - ed

THE FEEL-GOOD HIT OF THE SUMMER!
By Douglas Lathrop

Am I the only person in all of gimpdom who has never tried his hand at motivational speaking? It sure does feel that way sometimes. I must know of at least two dozen people who do it regularly, in some cases pulling in a thousand bucks or more per appearance - in cash, so as not to jeopardize their SSI payments - just for putting on a suit and spending an hour at a Ramada Inn telling Kiwanis clubs or middle-management training seminars what they want to hear: that life is a big, juicy apple ripe for the plucking, and that nothing can keep you away from the tree if you have enough drive and the right attitude. Thank you, and God bless, and enjoy your rubber chicken.

To get in on the action is definitely tempting. Easy money always is. My problem though, is that I'd suck at it. Either I'd be too cynical to believe my own bullshit, or not cynical enough to lie shamelessly to a roomful of people - even if that's exactly what they're paying me to do. I'd give a convincing performance at first, but after one or two or seven cocktails I'd be sobbing into the microphone over the ever-deepening sinkhole my life has become. Or I'd go all Doug the angry Dwarf on them and rant about how they were all pathetic wastes of oxygen who'll be the first ones against the wall when the Revolution comes. It might make for a successful comedy act - particularly once the book and DVD hit the cult circuit - but motivational speaking? Not so much.

(Continued On Page Two)

 

Table of Contents

President's Message
............
1
Don't Get Mad, Get Elected
............
1
The Feel-Good Hit of the Summer!
............
1
Refrigerator Calendar
............
3
For Sale
............
5
     

     

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THE DERBY CITY NSCIA NEWSLETTER


Derby City Area Chapter
of the
National Spinal Cord Injury Association


ABOUT THE ORGANIZATION

The Derby City Area Chapter of the N.S.C.I.A. is a membership organization for individuals with spinal cord injuries, their families, and health professionals. Founded in 1984 as a Charter Member of the N.S.C.I.A., it was incorporated under IRS Section 501 (c) 3 as a not for profit organization. The Board of Directors consists of the Officers, Past President and the Board Members At Large.

***

OFFICERS

PRESIDENT
David Allgood - (502) 589-6620

VICE PRESIDENT
Adam Ford - (502) 425-2206

TREASURER
Tom Stokes- (502) 957-5865

LIAISON TO FRAZIER INSTITUTE
Dr. Bill Kraft – (502) 582-5865

FUNDRAISING CHAIR
Betty Perry—(502) 647-0368

CORRESPONDING SECRETARY/WEB MASTER
Michael Feger- (502) 647-0368

PAST PRESIDENT
Adam Ford- (502) 425-2206

BOARD MEMBERS AT LARGE-
Mike Perry
Kelly Young

NSCIA
DERBY CITY CHAPTER
NEWSLETTER

Editor- Barbara Davis

Contributor- David Allgood

 

Prostitution is easy money, too, but I don't need hands-on experience as a hooker to know I'd do a lousy job.

The fact that any gimp with a good spiel and a power tie can earn a decent living as a self-help guru says a lot about what society wants from us. The actual words that we say to them don't matter; we could speak entirely in Pig Latin, or make wah-wah noises like the adults in Peanuts cartoons, and still wheel away with payment for services rendered. It's the sight of us - our clean and well-groomed, but still damaged, bodies - that's the “motivator” here. The most beloved symbols of disability in both literature and real life - from Tiny Tim to Christopher Reeve - exist to lift the spirits of people being carelessly ground down by the injustice, senselessness, and evil of daily life. “One day I'm going to throw away this crutch and run and play like the other boys,” says Tiny Tim. “One day I'm going to throw away this ventilator and fly to the moon like Superman again,” says Reeve. Whether it's through the pages of a book or the bit of CGI fakery in a Super Bowl commercial, we give society what it wants, over and over again. What society doesn't want is the truth. And the truth is, we are all depressed.

Not clinically depressed, necessarily. Clinical depression is a serious disease, and a disabling condition all by itself. I'm referring to that quiet, unwelcome, but impossible-to-ignore feeling that sits on your psyche like a month-old dog turd on the living room carpet. It's what makes you huddle silently in the corner of a party because of a nagging sensation that no one wants you to be there. It's what makes you cancel that job interview because the building may be inaccessible, or the interviewer may take one look at you in your chair and tell you she's sorry, but the position has been filled. It's what makes you leave your television set at the nursing home on the same channel for days because you don't want to bother anyone by asking them to change it. It's what makes you stay with an abusive partner because you can't imagine that anyone else will ever love you - and besides, he or she has put up with whipping your ass all these years, so the least you can do is show some gratitude.

Left unchecked, depression makes you stop living in the world. Ultimately, it makes you stop living, period.

I like to believe that my own depression is under control, that a supportive family and friends, a rewarding career, travel to faraway places, and a life with its share of fun experiences and community activity - not to mention two years of weekly therapy sessions in the 1980's - have shoved it into the far background where it belongs. But then, every so often my guard will slip, and before long I'm turning the mirrors in my house toward the wall so that I don't have to look at myself, or spending the better part of the day in bed no matter how much the cat bugs me to get up and feed her. If I have to leave the house in this condition, I'll screw on a smile and pretend to be my usual good-natured self - because my friends all have their own problems and I don't want a

(Continued On Page Four)


     

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THE DERBY CITY NSCIA NEWSLETTER


Refrigerator Calendar
*2004


 

JULY

5th - Elderly & Disabled Advisory Council Meeting
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

19th - NSCIA Derby City Area Chapter meeting; 7 p.m.; Frazier Rehab
Mon 4th floor dining hall; speaker:

17th - Metro disAbility Coalition Meeting; 1 p.m. - 3 p.m.; PVA Office on Goss Avenue.
Sat Speaker to be announced; if questions, contact Terri Leasor at 589-6620 or at mdclouky.org

15th - Louisville Metro Sweep for Access
Tues Crescent Hill Library; 2762 Frankfort Avenue



AUGUST

2nd - Elderly & Disabled Advisory Council Meeting
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

16th - NSCIA Derby City Area Chapter meeting, 7 p.m., Frazier Rehab.
Mon 4th floor dining hall; speaker to be announced.

21st - Metro disAbility Coalition Meeting; 1 p.m. - 3 p.m.; PVA Office on Goss Avenue.
Sat Speaker to be announced; if questions contact Terri Leasor at 589-6620 or mdclouky.org

17th - Louisville Metro Sweep for Access
Tues Crescent Hill Library; 2762 Frankfort Avenue

 

For More Information Call
David Allgood, 502-589-6620

 


     

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THE DERBY CITY NSCIA NEWSLETTER


FEEL-GOOD HIT OF THE SUMMER, Contd

reputation as the high- maintenance guy in the group. Can't let them think I'm just another bitter and self-pitying cripple, can I?

Perhaps I am simply projecting my own issues onto those around me. But countless conversations with other people with disabilities, and observation of the behavior of even more, has forced me to conclude that depression is near universal in our community. The only ones who claim otherwise are either in denial or running a con game. Or they're motivational speakers.

“This guy is so full of crap,” I hear some readers saying. “I never get depressed. OK, maybe I have been, but isn't everybody depressed these days, whether they're disabled or not?”
Possibly. I live in California - everyone in this state has visited a therapist at least once. Psychobabble is such a common language here, we should print our election ballots in it. What's different about depression among people with disabilities is in its treatment, or lack thereof.
In my mid-thirties I had a bout of serious depression and found myself plummeting down a steep and terrifying emotional spiral. The people around me, as they always had, complimented me on how “cheerful, confident, and well-adjusted” I was in spite of my disability. Meanwhile, I spent more and more time in my room with the door closed, crying for no reason, and I was in danger of losing my job because I couldn't concentrate on my work. To top it off, I was experiencing the Triple Crown of doomed relationships: wrong person, wrong place, absolutely the wrong time.

Finally, tired of feeling so out of control, I started calling therapists. The first one sounded promising, so I went in for a consult. I explained to him that I had been born with osteogenesis imperfecta, that I was having trouble with depression, and that I wanted to find out why, and how to overcome it.

“Is there a cure for your condition?” he asked.
“For OI? No, I don't think there will ever be a cure - not in my lifetime.”

“Don't you want to be cured?”

“I never gave it much thought. Since there isn't a cure, what's the point?”
“Hmmm…”

A few minutes later he began talking about limb-lengthening surgery, which he'd read about once in the paper. “A lot of dwarfs are having it done these days.” I replied, with decreasing patience, that OI is not the same as Dwarfism, and besides, for someone

 

with brittle bones, having my legs broken repeatedly to add a few inches to my height was the worst form of torture I could imagine.
His response was another, “hmmm.”

We repeated this for a full hour. I'd attempt to ask him about depression and he 'd circle back around to the medical details of OI and my “refusal” to consider a cure. Afterward I shook his hand politely and raced to my van. I couldn't get away fast enough.

The second therapist didn't even make it past the initial phone call. I barely finished introducing myself before she stopped me, said she didn't believe my depression had anything at all to do with my disability (How she had reached that conclusion after less than a minute remains a mystery to this day). She referred me to a psychiatrist and suggested that I request a prescription for a new drug that had just come on the market.

My next call was to a friend working on his masters in psychology. “Hey Dude, what the hell is Prozac?”

On the brink of giving up, I decided to call one more therapist. This time I lucked out. While warm and empathetic, she also had a matter-of-factness about her and it was clear that she did not suffer fools gladly - I took an instant liking to her.

Moreover, her husband was a quadriplegic, and both of them were active in the disability-rights movement. During her sessions she repeatedly stressed that her job was not to make me “normal“, to lower my expectations or to re-program me into accepting the status quo, but rather, to help me to develop the confidence and self-esteem by which I could accomplish my own goals and effect positive change in the world. No Woody Allen-style-five-days-a-week-analysis for her.

We covered a lot of the usual psychological ground - childhood trauma, body image, sexual anxiety, and so on - and worked on some guided-imagery exercises to help me relax and improve my concentration. But we occasionally took up whole sessions discussing the psychology of disability - and the double standard to which it is held by society. I came to understand that certain traits largely disapproved of in our culture - low self-esteem, lack of assertiveness, dependency, learned helplessness - are expected and even encouraged among people with disabilities. We may get patted on the head now and then for showing courage or being inspirational, but more often, folks would rather assume that we live miserable lives full of self-pity and despair. In that way, they reaffirm their

(Continued On Page Five)


     

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THE DERBY CITY NSCIA NEWSLETTER


FEEL-GOOD HIT OF THE SUMMER, CONTD

own belief that they would rather be dead than disabled. Politicians like us depressed because it makes us less likely to vote against them for cutting our services or gutting the ADA. Health care professionals and social-service bureaucrats like us depressed because it makes us easier to manage.

When we're depressed our world shrinks. Our needs are reduced down to the most basic, and we'll tolerate anything to get them, even the most degrading abuse and mistreatment. Simply put, depression makes us less uppity.

Yet even if we are depressed as a group, what can any one person do about it, other than submit to long hours of therapy that he or she probably can't afford, anyway?

Actually, I hesitate to recommend therapy to anyone. I personally found it beneficial, but the world is full of awful therapists. Undoing the damage caused by a badly trained, malicious, or just plain stupid therapist is harder than going without it in the first place. I've also come to agree with James Hillman and Michael Ventura, in We've Had a Hundred Years of Psychotherapy and the World's Getting Worse. They say the modern-day “talking cure” has encouraged navel-gazing at the expense of making real connections with the world: “Why are the intelligent people -at least among the white middle class - so passive now? Because the sensitive, intelligent people are in therapy?”
Are antidepressants the answer? I've never tried them, so I couldn't say. Expense aside, it would take a depressive episode of catastrophic proportions to for me to consider screwing with my brain chemistry. Even then, I would still have a niggling, unanswerable question in the back of my mind: “Am I taking these pills to feel better, or just to feel “normal?”

At the end of the day, any advice I could offer boils down to an endless series of imperative sentences. Want to feel better? Turn off the television. Read a book. Go outside. Get to know people in your community. Talk to other people with disabilities. Dance. Go to a disability rights action. Party hard. Listen to music. Write letters to Congress. Masturbate. Ask God for help. Ask Buddha for help. Ask the ghost of Madelyn Murray O'Hara for help. Wheel down to the neighborhood bar and have a beer. Vote. Watch nature. Have more sex than anyone can stand. Argue. Question. Raise Hell. Create. Live. See how easy motivational speaking is?

 

FOR SALE!!!!***

2003 Ford F-250 lift-equipped green/gray van; leather seats, TV, DVD player. Playstation hookup, am-fm radio. Rick Miller, 937-2245.

Shower Chair; 2 yrs old, negotiable; 2 RoHo cushions; low profile; $150 each; Invacare 900 Action Power Chair; 4 yrs. Old; $600. Call 448-5296.

*Wheelchair; 20” wide; adjusted petals; standard wheels; asking $2,2500. Quickie wheelchair; 19” wide; asking $2,000; needs batteries. New bedside commode; used; $75.00. Call 502-636-4043.

*1984 Dodge Ram; handicap conversion; Crow River lift w/exterior/interior controls; heightened roof/door; captain chairs; exchange driver’s seat; hand controls; AC; AM/FM cassette & CB radios; wheelchair lock down/ties; rear bench; 2 spare captain chairs; 86,584 miles; good condition. Call 859-734-6852.

*2002 Dodge Caravan “Entervan” (Braun modification); app 18,000 mi; remote operated oil recently changed; mechanic confirms excellent condition; used only a little more than 2 mos.; $34,000. Call 859-492-7971.

 *Ford 1997 Econoline Van; 100,140 mi; $16,000. Hunter Green-gray; new tires & brakes; “loaded”; call 270-786-4547; ask for Dale.

*1994 Dodge Caravan, equipped with lock down for driving; cruise control; tinted windows; 56,000 miles; good condition; $14,000; contact Ina Hogan at 241-7849.

*Hoveround MPV4; used only one year; 36” long; 23 1/2” wide; load capacity 300 lbs.; two direct drive motors; turning radius 17”; speed 5 mph. Asking $5,000 or best offer. Call 671-7656.

*Jazzy Electric Wheelchair; $2,000; 812-867-0137.

*1985 Komfort Koach Van with Power Lift; V-8; 350 BB; 5 liter engine; wheelchair safety straps; hook; television; power window and door locks; 127,000 mi; excellent condition; new tires; AC/front and rear vents; cruise control; AM/FM radio; tape deck; CB radio; game table and window shades; trailer hitch. Asking $2,995. Call 425-0314.

*Heavy Duty Scooter; used less than 50 hours/2 new batteries; $1200. Call (502) 348-9305.

*Liberty Stairlift/Set for 13 steps; $1500 soft; 937-9492

*Video tapes for sale. Various topics related to spinal cord injuries. Call David Allgood or Buddy Lawson.

***If assistance is needed to pay for any of the above items, contact Kentucky Assistive Technology Loan Corporation at  for information on loans at 5% interest to qualified candidates.


     

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THE DERBY CITY NSCIA NEWSLETTER


You are cordially invited to join us!

The Derby City Chapter of the National Spinal Cord Injury Association
consists of people with spinal cord injuries and similar physical conditions, their family members, friends, and
professionals or other interested parties.

We meet:

WHEN- Third Monday of every month from 6:30 to 9:00 PM
WHERE- Frazier Rehab Center , 4th floor Dining Room
220 Abraham Flexner Way

If you wish to be a member, donor, and/or be on the mailing list of the Derby City Chapter of the National Spinal Cord Injury Association please complete and mail the following form to the address below

National Spinal Cord Injury Association
Derby City Chapter
Membership & Organization Sponsorship Form

Name: Mr./Mrs./Ms./Dr. ________________________________________ Date: ________

Address: ______________________________________________________ Apt.# _______

City/State/Zip: ______________________________________________________

Business (if any): ______________________________________________________

Home Phone: (____)____________________ Work Phone: (____)____________________

Date of Birth _______________________

Para: ______ Quad: ______ Hemiplegic: ______

Level of Disability __________________ Other Disability __________________

Able-Bodied(yes/no): ____________

New Member: __________________ Renewal: __________________

Newsletter Subscription (only $12): __________________

Special Interests /Hobbies/Sports: _____________________________________________

****

Membership is open to all individuals and sponsorship to all organizations interested in spinal cord injury.

Mark Type of TAX DEDUCTIBLE Individual Membership or Organization Donor Category Desired***

Regular-$12 ___________

Sponsor-$25 ___________

Patron $50 ___________

Benefactor-$100 ___________

Permanent- $1000/lifetime** ___________

Bronze Organization-$100-249 ___________

Silver Organization-$250-499 ___________

Gold Organization- $500-999 ___________

Platinum Organization-$1000-2499 ___________

Diamond Organization-$2500 0r Over. ___________

   

Please make checks payable to: NSCIA Derby City Chapter

David Allgood
6703 Triangle Drive
Louisville , KY. 40214